Planning Steps for Parents of Special Needs Children

April is Autism Awareness Month, which seeks to educate the public about the needs and challenges facing those with autism spectrum disorders.

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According to AutismSpeaks.com, the disorder affects one in 36 children in the United States, with boys being four times more likely than girls to be diagnosed on the spectrum. The prevalence of autism has also increased 57 percent from 2002 to 2006, thus prompting The Centers for Disease Control and Prevention to refer to autism a "national public health crisis".

Yet while autism awareness is at an all time high, Worrall warns that many parents are still in the dark as to how to make sure their child is physically and financially cared for if and when death or incapacity occurs.

"As much parents of special needs children hate to think about it, there will come a time when they are physically unable, or perhaps no longer alive, to oversee their child's care," warns Atlanta, Georgia, special needs and estate planning lawyer Steve Worrall. "That's why long-term care plans must be put in place as soon as a diagnosis is made to ensure the child always stays physically and financially protected if the unthinkable occurs," he adds.

While Worrall does admit that the options for long-term care planning are broad and depend on the needs of the child, he explains that parents can simplify the process by starting with these 3 key planning steps:

Name Guardians

Worrall urges parents to immediately name short and long-term guardians who can oversee their child's care if something unexpectedly happens to them. Without such designations in place, the child could end up in a lengthy custody battle or worse be placed in foster care if the unthinkable happens.

Worrall advises parents to think outside the box and focus on finding someone whose love and dedication to the child closely resemble their own. Finally, parents should give copies of their designations to the guardians themselves, as well as the child's school, babysitters and even the neighbors so everyone knows exactly who to call if a crisis strikes.

Set up a Special Needs Trust

A special needs trust is a legal tool that ensures a disabled child's health care and living needs are taken care of if something happens to mom or dad.

Worrall explains that while many parents have good intentions of leaving their child life insurance benefits or other assets in a will if they pass, leaving a child an inheritance outright could void their eligibility for Social Security or Medicaid in the future (which is often the only health care option available). Instead, a trust helps to ensure that the child receives such financial benefits without actually having assets in their name thus leaving all government benefits intact.

Build a Team of Support

It's never too early to begin building a team of trusted caregivers and advisers who can immediately step in and help the child if a crisis occurs. Such team members may include the child's legal guardians, a trusted doctor, financial adviser, estate planning attorney and dedicated family or friends. Building such a team now also helps to ensure you have the right people in place, as opposed to someone who will prey upon your child's disability in an emergency.

"Parents of special needs children must go into planning with the mindset that their child will require a lifetime of care," says Worrall. "Fortunately, by starting with these 3 key steps, parents will make tremendous progress in ensuring their child is physically and financially cared for in their absence."

Author Credentials: Ian is the founder and Editor-in-Chief of Disabled World, a leading resource for news and information on disability issues. With a global perspective shaped by years of travel and lived experience, Ian is a committed proponent of the Social Model of Disability-a transformative framework developed by disabled activists in the 1970s that emphasizes dismantling societal barriers rather than focusing solely on individual impairments. His work reflects a deep commitment to disability rights, accessibility, and social inclusion. To learn more about Ian's background, expertise, and accomplishments, visit his full biography.